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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. K

    Article: The Singh XMRV Study Strikes Out

    Thank you so much, asleep. You make points about things that I have made note of in my lurking here (I do check in daily). Yours is a very cogent and detailed post; I don't think you missed a thing that I also have noticed over time. All of these things keep popping up in various venues, but...
  2. K

    Article: The Singh XMRV Study Strikes Out

    What evidence? Without true replication (I'll refrain from shouting this time /grin) any conclusions don't truly reflect on the original study - that's science. The negative studies have proved they can't yet replicate the WPI studies. They can find contamination - sometimes. They've proved...
  3. K

    Article: The Singh XMRV Study Strikes Out

    All the negative studies are playing politics. Just think a little about what is at stake here. If these guys can prove that the WPI study is wrong, well, they can then have a little race to the wire with who WILL find it and then you're looking at patents and drugs and research money. The...
  4. K

    Article: The Singh XMRV Study Strikes Out

    There are lots of things wrong with this study, more than the quote above, though that certainly counts and is central to my criticism. Did Singh actually prove that she could even detect XMRV in a bona fide CFS patient to begin with? I wonder. That, to me, should be a fundamental requirement...
  5. K

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    Thanks for your input on using psychiatric drugs for many uses, some of which aren't exactly intuitive. I have been subject to trials of SSRIs, etc, in a search for pain relief among other things. None have worked and all have had horrible side effects and were a nightmare to discontinue. I...
  6. K

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    I've been working my way through the CD set of the latest Invest in ME conference in London that was this last spring. During the roundtable discussion both Dr. Klimas and Dr. Cheney said that they have had a bunch of young men (adolescent to early 30's I'm guessing) with CFS show up in their...
  7. K

    Comment by 'Krizani' in 'XMRV at the Fed: Conspiracy or Confusion?'

    I've done an awful lot of reading and research over the years of my illness (25 and counting) and through coincidence, often, a dark picture can emerge, depending on how you care to look at things. Also, there seems to be a whole bunch of previously unlooked at issues from diverse areas that are...
    • Krizani
    • Blog entry comment
  8. K

    Comment by 'Krizani' in 'The Ampligen Supremacy'

    I too have tried just about everything on the planet and here I am, sicker than ever this year. I've had a long, hard look at how long I think I've been infected (I'm XMRV positive among other things) and it goes back to about 1978. The "big crash" didn't happen till later, but the evil little...
    • Krizani
    • Blog entry comment
  9. K

    Comment by 'Krizani' in 'How to Answer "What's Wrong With You?"'

    I don't think saying I'm HIV positive is over the top at all. It's something that *everyone* understands and it's not that far off the mark with XMRV now on the scene. I recently broke down and got myself a cane. I guess I was resisting for a long time and have needed it for a long time too...
    • Krizani
    • Blog entry comment
  10. K

    Comment by 'Krizani' in 'The Faith of Fate'

    I'm one of those happy Sims 2 people! It's nice to be able to say a personal thanks for the hours of enjoyment you helped with. Well, if it wasn't for CFS I'd probably never have played Sims and then never been able to say thanks for all you've done. That's pretty cool.
    • Krizani
    • Blog entry comment